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Thread: Changing irrigation tools?

  1. #11
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    Default Re: Changing irrigation tools?

    Quote Originally Posted by Lilly View Post
    Hi Anne, I have written down the amino acid you take as a supplement...I think you and I have about the same amount of destruction in our sinuses, by the way you describe yours now. I could definitely use something to help the mucous that builds up in my throat and causes me to cough all the time. And I was wondering, unless I am on a high dose of steroids (during a flare) I tend to have a lot of mucous, especially in my ears. Do you have that problem? And if so, does that amino acid help that? Thanks Anne Blessings and love
    Hi, Lilly. I have various problems in my ears but never felt like there was a buildup of mucus in them. Are your eustachian tubes functioning enough to drain it out that way? If so, I think the NAC would help with thinning the mucus so it would drain. I used to use Mucinex or liquid guaifenisen to thin mucus but someone on the forum suggested NAC and I think it works much better if taken regularly. It may take a week or two to notice a difference. I get mine at the Vitamin Shoppe or Super Supplements, and it can be found online. I have 600mg capsules and take one twice a day, morning and night. The bottle will say other things about what it is good for, but I know others who can attest to its mucus thinning ability. The good thing about having no sinuses is, according to my ENT, we are no longer subject to sinus infections! Best to you!

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Last edited by annekat; 01-17-2018 at 02:36 AM.
    Anne, dx'ed April 2011

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  3. #12
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    Default Re: Changing irrigation tools?

    Hi Anne, Well, my ears have been pretty easy to maintain in the last 5 years, I would just go to my EENT when I had an ear infection, or pressure in my ears, and he would suction out the infection and put a tube in. That was working great, until the Christmas of 2016, when my tube was stuck sideways in my ear, and I had a quick out patient surgery where my EENT removed the stuck tube and tried to suction out the "fluid"....but he said it was like glue...very thick. This worried me, and I could tell it worried him too, because he acted surprised about it. But I had my tube in my left ear, and also replaced the one in the right. This was not a happy ending, as almost immediately (within a week) my ears felt like I had cotton in them. If I slept on my right side, I would wake with my right ear pounding, and clogged up. During the day, it would go back and forth. I went back to my EENT, and my tube he put in was out in the left ear, and there was a hole left. Nothing else he could do. I asked him if he could suction out whatever was blocking my hearing and causing me pain, but he said there was nothing there. So I guess whatever I am feeling in my ears is not in the middle ear. I am going crazy because my hearing is so effected by this, and I have constant ringing and white noise and a roaring sounds in both ears. I was just about to try mucinex, to see if I can get some relief, then I saw what you wrote. I may get some at the Health Hut, a Health food store my Mom and sisters and I get all our healthy items from. Sorry so long, I am really having a hard time thinking straight. I'm sure I will get used to it if I have to, but having noise in your ears constantly, and trying to focus on anything is difficult for me. My Mom and I are working on trying some things that may help. Thank you Anne, Oh, BTW, I found your pottery on Instagram. You are very talented!! I Love your style....Blessings and Love,
    Life is a Gift~ Lilly

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  5. #13
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    Default Re: Changing irrigation tools?

    Quote Originally Posted by Lilly View Post
    Hi Anne, Well, my ears have been pretty easy to maintain in the last 5 years, I would just go to my EENT when I had an ear infection, or pressure in my ears, and he would suction out the infection and put a tube in. That was working great, until the Christmas of 2016, when my tube was stuck sideways in my ear, and I had a quick out patient surgery where my EENT removed the stuck tube and tried to suction out the "fluid"....but he said it was like glue...very thick. This worried me, and I could tell it worried him too, because he acted surprised about it. But I had my tube in my left ear, and also replaced the one in the right. This was not a happy ending, as almost immediately (within a week) my ears felt like I had cotton in them. If I slept on my right side, I would wake with my right ear pounding, and clogged up. During the day, it would go back and forth. I went back to my EENT, and my tube he put in was out in the left ear, and there was a hole left. Nothing else he could do. I asked him if he could suction out whatever was blocking my hearing and causing me pain, but he said there was nothing there. So I guess whatever I am feeling in my ears is not in the middle ear. I am going crazy because my hearing is so effected by this, and I have constant ringing and white noise and a roaring sounds in both ears. I was just about to try mucinex, to see if I can get some relief, then I saw what you wrote. I may get some at the Health Hut, a Health food store my Mom and sisters and I get all our healthy items from. Sorry so long, I am really having a hard time thinking straight. I'm sure I will get used to it if I have to, but having noise in your ears constantly, and trying to focus on anything is difficult for me. My Mom and I are working on trying some things that may help. Thank you Anne, Oh, BTW, I found your pottery on Instagram. You are very talented!! I Love your style....Blessings and Love,
    Don't know if NAC will help your ears, but it's worth a try. I think I have had that thick gluey stuff, too, but didn't think of it as mucus. So many things have happened with my ears, I can't remember. One if my ear drums is eroded mostly away and the little bones behind the drum are also eroded. Hearing in that ear is now too dead for a standard hearing aid, though the other ear is hearing pretty well with an aid. I also get dizziness and vertigo, a balance problem in the middle ear, though vision issues and messed up feet are also contributing. Sometimes I get roaring or other tinnitus and pressure in my ears and then it goes away. Sometimes my ears get very sensitive to sound, though I'm half deaf, things sound louder. Doc thinks I may have Menieres disease, which is hard to dx. I have discovered my ears are very sensitive to atmospheric pressure changes, as in weather changes, and Doc confirmed that some people are. I've met several people with this issue, non Weggies, who get stuffy and weird ears at these times. I take a sedative for the potential vertigo and find that pseudoephedrine also helps with that and with the weather changes. A lot to digest, and we've diverged from the original post! I know there are forums for various ear problems and pressure changes. I hope you can get some relief. I do remember looking up glue ear on the web and you might try that, and I think it's been mentioned on this forum, too. Good luck!

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Last edited by annekat; 01-17-2018 at 06:56 AM.
    Anne, dx'ed April 2011

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    Default Re: Changing irrigation tools?

    Quote Originally Posted by Lilly View Post
    I am so happy for you, and that your doctor has helped you with this way of treatment. Sounds like you are a very dedicated patient also, who wants to be in control of this disease, and not the other way around!! Blessings,
    Yea, my ENT is a rock star! I have to be in control of this stupid disease, its the only choice I have if I want to keep my nose as good as it is!!
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


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    Default Re: Changing irrigation tools?

    Hi Anne, well you gave me some great information!! I am so sorry about your ears. Its so difficult with wegeners, when you lose something, its gone forever!! The ears are SO amazing! They are extremely delicate, and the way we are able to hear, with vibrations and the tiny cochlear hairs, its just amazing to me. But they are tough at the same time, and will take years of putting tubes in them. The way you explain the pressure you get in your ears, and the way it goes back and forth, that is how mine does now. I am going to look for the ear / glue ear, on the forum. My Mom has bought a device that is supposed to help you hear loud noise, like talking and TV, etc. and block out the roaring noise. I go over there tomorrow, Ill let you know if it works. I also have to take meds for nausea sometimes, because of my ears, I have vertigo, and I get off balance very easily. It doesn't help that I have a bunion on one foot that is so bad, the doctor says he will have to break the bone, and put my foot back together with a pin and screws. My other foot had issues also, so I wear a custom made brace to help it not hurt so bad when I am on it. So, if I have the bunion surgery, I will have to depend on the other foot for like 6 weeks!! Not sure I can do that. But my bunion foot hurts and bothers me and even wakes me up at night. My eyes were effected pretty bad from scar tissue clogging my tear ducts. For years I have had a little plastic tube threaded through the tiny ducts in the corner of my eyes. This let my eyes drain, like they are supposed to. When the tube fell out, tears would stream down my face. Then they got so bad that the tiny plastic tube didn't work, so I got a glass tube, special made for me. The doctor set it in the corner of my eye, to drain into my sinus. I had a couple sets made, because sometimes they would fall out, or I would swallow them without knowing. But now, there is no sinus tissue left for the glass tubes to rest on, so they just fall out. So I now have to live with tears in my eyes always. (another off the subject issue-lol) I certainly hope you don't have Meniers disease. So many weggies have other autoimmune illnesses....it doesn't seem fair. Well, Anne I cant thank you enough for chatting with me and giving me some great information. Stay Strong!! Blessings and Love my Friend,
    Life is a Gift~ Lilly

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  11. #16
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    Default Re: Changing irrigation tools?

    Quote Originally Posted by Lilly View Post
    Hi Anne, well you gave me some great information!! I am so sorry about your ears. Its so difficult with wegeners, when you lose something, its gone forever!! The ears are SO amazing! They are extremely delicate, and the way we are able to hear, with vibrations and the tiny cochlear hairs, its just amazing to me. But they are tough at the same time, and will take years of putting tubes in them. The way you explain the pressure you get in your ears, and the way it goes back and forth, that is how mine does now. I am going to look for the ear / glue ear, on the forum. My Mom has bought a device that is supposed to help you hear loud noise, like talking and TV, etc. and block out the roaring noise. I go over there tomorrow, Ill let you know if it works. I also have to take meds for nausea sometimes, because of my ears, I have vertigo, and I get off balance very easily. It doesn't help that I have a bunion on one foot that is so bad, the doctor says he will have to break the bone, and put my foot back together with a pin and screws. My other foot had issues also, so I wear a custom made brace to help it not hurt so bad when I am on it. So, if I have the bunion surgery, I will have to depend on the other foot for like 6 weeks!! Not sure I can do that. But my bunion foot hurts and bothers me and even wakes me up at night. My eyes were effected pretty bad from scar tissue clogging my tear ducts. For years I have had a little plastic tube threaded through the tiny ducts in the corner of my eyes. This let my eyes drain, like they are supposed to. When the tube fell out, tears would stream down my face. Then they got so bad that the tiny plastic tube didn't work, so I got a glass tube, special made for me. The doctor set it in the corner of my eye, to drain into my sinus. I had a couple sets made, because sometimes they would fall out, or I would swallow them without knowing. But now, there is no sinus tissue left for the glass tubes to rest on, so they just fall out. So I now have to live with tears in my eyes always. (another off the subject issue-lol) I certainly hope you don't have Meniers disease. So many weggies have other autoimmune illnesses....it doesn't seem fair. Well, Anne I cant thank you enough for chatting with me and giving me some great information. Stay Strong!! Blessings and Love my Friend,
    Thanks, Lilly. I also have bunions and feel they contribute to balance problems. Menieres disease is not autoimmune, it is just a name for a syndrome and they aren't sure what causes it. It can go away for years and then come back. But vertigo can be caused by so many things! I have talked to several non-Weggies who have it too and some have had much worse episodes than mine, lasting for days or weeks. I also get the watery eyes but not all the time. So we do have a lot in common. If you'd ever like to PM me about any of it, either here or on Facebook, you are welcome to. Love to you, too!!!



    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

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    Default Re: Changing irrigation tools?

    I use the Navage system sometimes and the Neil - Med every day. No major crusts since October till I ha a few this past week. I think that was corresponding with a cold and congestion that I've been dealing with.

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    Default Re: Changing irrigation tools?

    Quote Originally Posted by MikeG-2012 View Post
    My ENT and I worked together with the wands from the sinu-pulse machine to learn to get one of the wands, without the tip, into my nose safely and get the water jet where the crusts are. He showed me the proper way to insert the wand and it has worked great to keep my nose clear.

    One technique that I found, and that my ENT agreed was a great one, is to run antibiotic with the waterpik on the slowest setting while pinching the opposite nostril closed. When the water starts to tickle the top of the palate, stop the flow of water and let it sit in the nose as long as possible. (It is not really that hard after a while.) This method gets the solution into all the dark, damp nooks and crannies of the nose and sinuses, where the infection hides and breeds the most.

    Switching to the sinu-pulse and waterpik type devices has been the single best thing I have ever done for my nose and sinuses. I got through a sinus only flare-up in 2013, where my sinuses "look like hamburger" (ENT's words) by diligently rinsing. At one point, I was running almost 6-9 liters of saline through my nose every day. I would mix the saline in one of these 1 gallon pitchers. I used those useless little storage containers that come with big sets to pre-mix slat and baking soda mixture for one gallon at a time. During the worst of this time, I was at the ENT weekly to have crusts pulled out.

    Today, I am on RTX, and my nose has recovered quite a bit. I have normal linings in my ethmoid sinuses, and my maxillary sinuses are better, but scarred. I still have minor crusting and rinse at least 2-3 times a week.

    Good luck with your battle!!
    Great Post. You and Lilly and the others have answered some of my questions. After reading the posts I ordered a Sinu Pulse. The wegs put a hole in my nose. Thinking it was the result of a car accident I have had almost a dozen sinus surgeries. How different my life would have been if I was properly diagnosed years ago. I lost sense of smell 45 years ago in accident. I can’t even imagine life without sinus pain. Sometimes it feels like an elephant is sitting on the right side of my face. The ENT who diagnosed wegs last year has had me on an oral antibiotic that is working. Two weeks off then another month of Rituxan infusions. The docs seem to think they can make me better. But I am skeptical. Where do you get the medicine you put in the rinse? On 12.5 mg Prednisone- I hate it. I’ve been on more and less. Less and I get a flare. Does the number of infusions and remission differ with everyone? Rheumatologist said if next Rituxan infusions don’t work we are going to Cytoxan infusions. Since I am sinus limited does this sound too aggressive? So many questions and so many of you are at a far more advanced stage than I, that I feel guilty even asking questions. Bless y’all. Masha

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    Default Re: Changing irrigation tools?

    The med I was given for use in the sinus rinse was made by adding Micropuricin to a liquid where it is pulverized and then frozen and then thawed as you use it. It was very expensive and had to be custom made at special facility. It took so long for me to get it that by then I had the infections under control and never had to use it.

    Some times people use other more common additives to hep reduce infections in the sinuses which your doctors could advise you on if they think it will help you.
    Knowledge is power! Wisdom is using it to make good decisions!

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  19. #20
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    Default Re: Changing irrigation tools?

    Quote Originally Posted by Masha View Post
    Great Post. You and Lilly and the others have answered some of my questions. After reading the posts I ordered a Sinu Pulse. The wegs put a hole in my nose. Thinking it was the result of a car accident I have had almost a dozen sinus surgeries. How different my life would have been if I was properly diagnosed years ago. I lost sense of smell 45 years ago in accident. I can’t even imagine life without sinus pain. Sometimes it feels like an elephant is sitting on the right side of my face. The ENT who diagnosed wegs last year has had me on an oral antibiotic that is working. Two weeks off then another month of Rituxan infusions. The docs seem to think they can make me better. But I am skeptical. Where do you get the medicine you put in the rinse? On 12.5 mg Prednisone- I hate it. I’ve been on more and less. Less and I get a flare. Does the number of infusions and remission differ with everyone? Rheumatologist said if next Rituxan infusions don’t work we are going to Cytoxan infusions. Since I am sinus limited does this sound too aggressive? So many questions and so many of you are at a far more advanced stage than I, that I feel guilty even asking questions. Bless y’all. Masha
    If your doc thinks RTX isn't working well and wants to try Cytoxan, I would think it worth a try. Some even use them together. But with your WG being limited to sinus at present, maybe he could go with a fairly low dose and/or for a shorter length of time. When I was dx'd, RTX was just starting to be approved and used for Wegs. I was started on CTX at a slightly lower dose than my body weight would suggest, and it cleared up my sinus and lung issues very well, to where I've only had a couple of moderate flares in 7 years and not for the last 4 or 5. I made sure to drink lots of water and only wish I hadn't been on it so long.... 8 months, when 4-6 should have been the top. Now on methotrexate, which is maintaining a low level of WG activity, along with 7.5mg prednisone. I'm glad not to be on RTX as so many seem to need it indefinitely and it is so expensive and disruptive to daily life for many. We are all different, though, and I hope you find a solution... sometimes we just have to try something and see if it works. Good luck!

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

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